Tuesday, June 17, 2008

New Day

Well yesterday was a lot of testing and one groggy girl. In the morning, she had a PET scan (??) they shot her up with some radioactive stuff and did some xrays. After that, they drew blood at 2 hour and 4 hour point. She was pretty edgy so they gave her anxiety meds to calm her down when they drew her blood. They worked good, but she was a bit loopy and pretty tired.

At 2:45 she went down to anesthia to get prepped for getting her "central line" put in and a stint for her kidney. She was screaming up a storm and we were surrounded by techs who kept asking me stupid questions (do they not read the chart!). Lisa was squirming so much and wanted out of my lap; trying to navigate in the small curtained area with a bunch of people around was impossible. I stood up and got her to standing when a tech asked me a question. I turned to look at him and let go of Lisa's hand, she took one step and fell face forward. Luckily she didn't hurt herself. All the techs were looking at me in horror....I tried explaining that she has a lot of leg pain and she was probably numb because of laying in bed all day...but they all just stood there gaping. Anyway.....she wouldn't settle down and they kept glancing at their watches. I finally just told them to hook her up...they gave her some stuff to calm her and I handed her to one of the young techs and told him he could carry her, put her on a bed or use their wagon but she wasn't going to get any calmer until they put her under.

4:45 Doctor let us know line was in and she was doing well. 5:45 Doctor let us know stint was in kidney and hopefully wouldn't be too much of an irritant for her. She was in recover until about 6:45 and then we brought her back to her room. She managed to eat some pears before passing out for the night. They ended up hooking her up to a blood transfusion (only after having a sign another form re: all the possible things that could go wrong) because her count was down.

This morning she seems a lot more peppy. She is schedule to have the MiBG
http://www.cc.nih.gov/ccc/patient_education/procdiag/mibg.pdf test this afternoon around 3:00. Doctor actually told Mike he could take her out of hospital for few hours. Unfortunately, he doesn't have a car and I'm at work...oh well, they can go to the playrooms...at least she isn't getting poked (well, except for the morning blood draw) this morning.

We will be meeting with doctors tommorrow afternoon to discuss treatment options. Keep praying....we've got a huge decision coming our way.


Sarah Rumptz said...


I really love your blog and website your brother has set up for you. What a great way to bring everyone together. I truly believe it makes the prayers stronger. Remember to take one day at at time. Love, Sarah

Anonymous said...

Hi Guys,
Wanted to let you know your entire family is in our prayers. I have forwarded on a prayer request to our family and friends as well. If you need any help with the kids please contact us.
The Kreagers

p.s. Lily says hi to Maranda

Anonymous said...

You guys have been in our prayers since we first heard on Sunday. Lisa, my favorite movie of all time is Finding Nemo also and Dory is the funniest fish ever! You are such a brave little girl with such a great smile. Everyone in our Church in Grand Haven is saying special prayers just for you. Stay Strong. Love Katherine, Kurt, Cameron, Adam and Owen Krizan

Anonymous said...

I also wanted to give you some advice past on our experience at Mott's Children's Hospital.

You are the only one there advocating for Lisa's care. Stay on top of the doctor's, residents and nurses constantly. Keep a white board of your requests and keep reminding the staff of your needs.

Try to get some fresh air when you can; even though it's so hard to leave Lisa with only one of you. Take turns stepping out, it's not good for you to be there constantly.

Just be assertive all the time!!!
Shelley Deemter

Anonymous said...

You don't know me but my mom goes to St. Pat's in Grand Haven and told us about Lisa.

My daughter was there in April for surgery and a stay at Mott's. We go to U of M frequently for both of my daughter's who have a rare conditions. I want to share our story. It's very different. But I want you to know miracles do happen if you just pray and believe. Lean on the strength of others and hold onto the faith and hope you have at this time.

Maddie's Miracle - A year ago, February 07, our 10-year old daughter was diagnosed with a rare hearing disorder which, we've been told, will likely lead to deafness. During a CT scan for her ears, they also discovered another distinctly different rare issue with her skull. Some of the bone is fibrous dysplasia. This is a very unpredictable tissue which can take many twists and turns. We were completely reeling from this when they said the hearing issue is genetic, let's test the other two children. Mitchell, 6, does not have the disorder. But, Brooklyn, 8, does have the bilateral hearing defect.

Needless to say we've had a year of doctor's appointments, heartache and trials.

The first week of April 2008, Madelyn's left eye was not quite right. We rushed to our specialist out-of-town and he said she many need emergency neurosurgery. The fibrous dysplasia had grown and was pushing her eye up at fairly rapid rate. Eight radiologists also thought her newest CT scan revealed the new tissue was cancerous. Granted, if her dysplasia becomes malignant, there is no treatment. We were beside ourselves with devastation. We began to pray and asked our CarePage members to pray. Quickly our CarePage doubled in visitors from 100 to 200 in about a day. We were placed on prayer lines throughout our small town and around West Michigan. We learned we were being prayed for across the U.S., Costa Rica, Italy, and Africa within days.

We were given a prayer pager so when God's people prayed they could call us and give us a sign we were being lifted up in prayer since the surgery was far from home and we were feeling alone. April 16 was Maddie's surgery. We told the doctor he was being raised up in prayer by many. Maddie's pager never stopped going off from the time we left home at 7AM until she was wheeled away to surgery at 4:45PM. She never let go of it.

The doctor setup the OR for 'stealth protocol'. He expected the worst as this tissue has a tendency to bleed uncontrollably. We were terrified but also blessed with grace to stand tall and believe. The doctor came out to give us an update - he was amazed. The surgery was going so well, no bleeding, and things on the CT scan were no longer present in her face. He said he had no scientific explanation.

The doctor had been asked days before if he had ever witnessed a medical miracle, and he had not. But this day, Maddie's day, he did witness a miracle. We found out throughout the day at school (a public school) there were moments of silence for Madelyn. Her friends started a 'popcorn prayer' in the lunchroom and many fifth graders joined in. We all stormed heavens gates and He answered our prayer. How could God say no to us? How could He say no to the little children who came to Him? Praise God from whom all blessings flow.

Shelley Deemter

Anonymous said...

I am on staff with Katie at St. Pat's in Grand Haven. My granddaughter, Madelyn, was recently at Mott's for surgery. Since then my daily prayer time has included any children at the hospital and all the doctors. Please know that even before you were there at the hospital I have been praying for you.

We all support you in Faith, Hope and Love. Jesus loves the little children and His strength along with God's grace will see you through this. Be clothed in prayer and embraced in God's love to know that you are all safely held.

Donna Szczepanski